22 and me

Today, as I’m starting a new month in my planner, I’m finishing my final day as 22. In the past two weeks I have written 5 drafts of blog posts, some of them I spent hours writing. Nothing I could say felt like it expressed how I felt, and those that came close I felt were too sad. The next day would be better and I wouldn’t feel as close of a relationship to the post, or the next day would be worse and I wouldn’t write. Today my planner asked me how I felt in my body.

I couldn’t answer this simply because every day my body feels different and lately everyday seems a little bit harder. Which made me continue reflecting about my 22nd year. The difference in my emotions and most drastically, my body throghout my 22nd year feels as though I was multiple people, some of these versions of me I don’t even remember feeling (being care-free). But they are all me, the me this summer, that learned to love unconditionally, with her whole heart open, to love herself, all parts- or so I thought, because I forgot about lupus.

Finding this feeling of just pure freedom this summer was done through long bike rides everyday, biking in the rain, biking in heat, biking down hills, biking beside water. Sitting in the park. Reading in my hammock. Writing in my hammock. Doing yoga, doing yoga with my best friend, doing yoga within a community. It was very physical, I was very grateful for my body. But I also spent a lot of time alone. I wrote a lot, I dug up some stuff, sorted through it and through books and surrounding myself with powerful, beautiful women as role models I gained a sense of power, love and sense of control I’d never felt before.

In the last few months of 22, when lupus made it’s unexpected visit the ease and peace I carried myself with felt forced, if not present at all. How could I love every part of myself when the definition of lupus is literally the body attacking itself. My body was attacking me and I was supposed to love it? The control I felt started to slip from my hands and the more I tried to grasp at it, the more I felt powerless. Trying to focus on the things I can control, I’ve been trying to find any area I can soften.

The past few weeks I’ve been in a lot of pain and I’ve been starting to feel a bit beaten. In these drafts I’ve written about prednisone withdrawal, a blood-clot scare, the fear of possiblities that lupus can create, about the toll methotrexate is taking on me and about the uncertainity of if my treatments or lupus are causing the worst of my current illness.

And I wrote about how this no longer feels like a fight against lupus itself.

Today after a lot of refletcting on my year, on this flare-up and about the year to come I’ve remembered a few things about my 22nd year.

-I started 22 with a trip to Iceland with one of my dearest friends. I saw some of the most beautiful things I’ve ever seen, I connected to the earth and I met new friends

-finished my semester with all A’s, raised my GPA sufficiently, connected with a professor who changed my life, and became more passionate about my education than ever

-returned to Costa Rica for 10 days and visited my favourite town and surfed with an old friend, practised yoga with my mom and some new inspiring people and explored different parts of the country and culture

-went to Disney World with my second family and shared memories with my favourite kiddos I’ll never forget

-moved into an apartment I absolutely love and had one of the best summers I have ever had

-connected to and grew in a community that has impacted my life in so many ways

-started a new school year and, despite lupus, finished another semester with almost all A’s, as well as completing an internship

-on top of these things I’ve also made a few new best friends

Because my illness came back so strong and the treatment decisions and side effects being so serious, I briefly forgot about the rest of my year and overnight all my energy went towards trying to get better. I thought that working on love this summer with the almost complete absence of lupus may have made it harder to cope with. This factor can be so overpowering when it causes me severe pain, when I have no energy, when I’m stuck in bed. It starts to effect my mood, some days it’s all I can think about. Some days everything feels numb and I’m going through the motions, I get everything I need to get done until I can’t do anymore. Some days I don’t feel like myself at all, I can’t remember that girl from 6 months ago and I begin to grieve over the days when pain or the sudden feeling that I’m literally dragging my body wouldn’t aprubtly take over my thought process in the middle of the day. With a shift in schedule and activities that I don’t have energy to do, nights I spend resting, every weekend, instead of out with friends, feeling the extreme difference in my strength and stamina when I work out has created a shift. My life is different when I’m fighting this hard, but I’m not.

But through remembering all these wonderful things I realized, I don’t need to struggle to love lupus because its not part of who I am. It’s something that impacts me and effects me, but it’s a label that doctors placed on me to define and treat a series of symptoms and illness that happen to my body. This illness and these symptoms can impact my thoughts, my abilities but they do not describe me, they are not attributes. Lupus is physical, it’s external.

The things that I do, the things I say, the way I act, the acitivities and communities I take part in, the things I study and I’m passionate about, the people I chose to have in my life, the places I want to discover and the gratitiude I live my life with are who I am.

The most part of my 22nd year of life taught me to cherish, to be grateful, to find peace, to love, to find light in everything, to give as much as I can to others but also to say no.

These things prepared me to take on this round of my battle. To remember although lupus is present and my body may be fighting a little harder, may feel a little weaker, I’m still all the things I was before. I’m all those experiences, all those people and all that work I did, and I love her 🙂

Good-bye 22, thank you

much love,

Jules